I am looking for others diagnosed with microscopic colitis
I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.
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ZenPep did not work for me. I tried several weeks on Creon With samples given to me by my doctor. Now I have a prescription for Creon, and will try it for several months. Initially, it seemed to help a lot. I have EPI found after taking a GiMap test. My amalyse level was 33 and my lipase and protease were also extremely low.
I hope the Creon is part of the MC solution, the Creon should definitely improve my ability to digest and derive the nutrients I need from my very very limited diet.
Wayne Pesky’s book and the blog are helpful and offer deep insight into MC.
Great, Budesonide worked on me for awhile then all my symptoms returned, even worse. Hopefully yours will stay in remission. I am troubled now by cramping and crippling fatigue. It could be due to the infusion therapy, not sure. Anyway, I just continue to forge ahead, don't know what else to do.
I totally agree, makes no difference what I eat, a piece of celery or a large hamburger, results are the same. The only thing that's helped is the infusion therapy in controlling the diarrhea. Still suffer from severe cramping 24/7 and fatigued all the time. I've lost a lot of weight, over 50 lbs and I'm a small woman to begin with. Don't know at what point weight loss becomes dangerous.
Does this look like it would be ok as a veggie substitute for me with
Gastroparesis!
What is infusion therapy for MC?
So sorry to learn of your situation. Cannot answer question re wt loss.
I eat no processed foods and no grains. Limited eggs, no soy.
I have lost weight also, and am approaching ideal for my small frame. I hope wt decline stabilizes @ some point.
The infusion therapy I receive is actually for Krones (sp) Disease and IBS but none of the medications I took could take care of my symptoms. It's Entyvio. It has relieved my diarrhea but still cramping, crippling fatigue, no appetite and continued weight loss. I had to wait for approval from Medicare before I could receive, the infusions cost $42,000 a year, too rich for my blood to pay. I get my 4th infusion tomorrow. Keep me posted as to how you are doing.
This website is focused on microscopic colitis. There's a great of info:
https://www.perskyfarms.com/phpBB/index.php
Hope this is helpful to you.
I was diagnosed with collagenous colitis 15 years ago. Daily imodium kept it under control until I contracted C-Diff three years ago that kept coming back until I had it for six months, then imodium did not work. I went through all of the suggested treatments, including budesonide, and nothing worked to stop my eight or nine bowel movements a day until I was put on Colestipol. I take one imodium and one Colestipol per day to control my symptoms and I watch my diet. I basically eat the Mayo Clinic recommended diet, gluten free, lactose free, lean protein, very low fiber, etc.. I take Cymbalta and that probably contributes to my intestinal problems, but I am unable to get off SSRI's because nothing else helps my depression. I'm glad someone brought this up because it is very rarely mentioned and there is not a lot of support available. Thank you!
@denisemarys
I was diagnosed with collagenous colitis 13 years ago. I was initially treated with methotrexate for a month. It worked- diarrhea stopped.
Since then I have had on and off episodes. 2915 I started immunosuppressive Imuran. Worked very well, but I got many serious infections and stopped after 7 months. I remained okay until a couple of years ago, when symptoms recurred, maybe not identical
, but now seriously affecting my quality of life.
Plan now is getting a referral from my internist to my local gastroenterologist about starting treatment again. Can’t wait!
I too was diagnosed with MC 2 years ago and have been frustrated with bloated stomach and diarrhea. The only thing that helps is keeping a food diary. I wrote down how I felt after each meal and was precise with naming the food or drink that I consumed. Pasta and fatty sweets are issues, as well as Asian foods and certain spices and seasonings. Restaurants can be a problem as they cross contaminate and use different oils that I never use at home. I tested negative for celiac disease. I researched and found out a lot of semolina flour pasta has the highest degree of gluten so I stopped eating it. I can eat regular bread ok as long as I don't eat too much. Bakery type sourdough bread is ok too. Bottom line, I must eat plainer foods and limit fats. I cook or steam veggies until they are soft which helps. Eating at home is best as I can control the preparation of the meal. I ALWAYS have issues with restaurants! Basically eating lean meat and cooked veggies works for me. Not too gourmet but I feel much better!